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PEN Steering Committee meets in New Orleans May 19-21, 2016

The Patient Engagement Network (PEN) steering committee met in New Orleans to learn more about the PCORI Grant and research process.

 

They will be nominating and leading a 30 SWF member committee over the next 2 years and working with researchers to draft and implement a strategic research plan. We truly appreciate Dr. Anna Pinto serving as the SWFIRN liaison and to all the committee for their dedication and insight!

 

Steering Committee Committee: Kellie Sadens -Chair, Davis Argersinger, Kaelin Ball, Jed Ellwood, Gloria Gomez, Mary Leonard, Jeffrey Needham, Anna Pinto, MD - SWFIRN Liaison, Candice Roberts, Julia Terrell, Karen Ball, and Brian Fisher.

 

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Patient Engagement Network

The Patient –Centered Outcomes Research Institute (PCORI) awarded the Sturge Weber Foundation a Eugene Washington PCORI Engagement Award in March of 2016.

 

This award enables the SWF to engage patient, families, caregivers, clinicians, researchers and other stakeholders in a process geared towards initiating and promoting patient centered research studies.

 

The SWF Steering Committee consisting of patients, caregivers (families), researchers and clinicians that will formulate the process and the content of two annual PEN SWS conferences that will bring all players involved into one room to focus future research initiatives that model patient-centered research. 

 

 

The Patient –Centered Outcomes Research Institute (PCORI) awarded the Sturge Weber Foundation a Eugene Washington PCORI Engagement Award in March of 2016.

This award enables the SWF to engage patient, families, caregivers, clinicians, researchers and other stakeholders in a process geared towards initiating and promoting patient centered research studies.

The SWF will have a Steering Committee consisting of patients, caregivers (families), researchers and clinicians that will formulate the process and the content of two annual PEN SWS conferences that will bring all players involved into one room to focus future research initiatives that model patient-centered research.

The broad purposes of the PEN are:

  • Empowering families and individuals with Sturge-Weber syndrome to obtain education, care and respect.
  • Exploring particular aspects of port wine birthmarks, Sturge-Weber syndrome or Klippel-Trenaunay including different genotypes and phenotypes that affect each individual and psychological and social impact on the individual and families.
  • Learning and obtaining new insights into the medical management, emerging and ongoing research endeavors and quality of life issues impacting individuals and their families.
  • Once the overall agenda is finalized by the Steering Committee, potential topics of discussion to be included in the annual conferences may span the following:

  • Comprehensive overview of the current standards of medical care including emerging devices, therapies and biotech innovations that will enhance a patient’s life.
  • Updates on the latest research for Sturge-Weber syndrome and the funding landscape
  • Families as advocates
  • Quality of life issues
  • Patient/stakeholder – clinician/researcher partnerships
  • Communication and dissemination of patient-centered research and disease management
  • Other pressing needs of the Sturge-Weber community.
  • An invitation is extended to SWF families and patients to search their hard-won fund of knowledge, experience, deep interest, curiosity, energy and willingness to commit your time and talent.  If these attributes are there, you can help make the PEN a successful endeavor that will truly advance the work begun in 1987. 

     

    At this time, the committee has been selected and the application process is closed.  

      

     

    The Patient-Centered Outcomes Research Institute (PCORI) Awards The Sturge-Weber Foundation a Eugene Washington PCORI Engagement Award

    MT. FREEDOM, N.J. – March 3, 2016 -- The Sturge-Weber Foundation (SWF), a 501 (c)(3) nonprofit organization, has received an Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI). The award will fund the SWF’s up coming Patient Engagement Network of Sturge-Weber Syndrome (PEN SWS) conferences.

     

    The two annual PEN SWS conferences will focus on the research outcomes of Sturge-Weber Syndrome that matter most to patients and their families. The conferences will bring together patients, families, caregivers, clinicians, researchers, industry and funding agencies with the goal of focusing on patient-centered outcomes research and comparative clinical effectiveness research.

     

     

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